My Mother's Caregivers Were More Like Family Than Employees

At ninety-one, my mother didn't want a caregiver, and she wouldn't even consider moving into an assisted living facility. She was fiercely independent and stubborn. She'd continue living at home alone in her tiny town (30 minutes away from the nearest hospital) without any help.

However, her body wasn't cooperating — the body she'd kept fit by walking five miles every day was breaking down and starting to betray the trust she put in it. And in her head, mental illness and dementia battled it out, and what had been charmingly eccentric before were scary delusions now.

In other words, she needed help yesterday.

Because she had a form of OCD, unofficially called Obsessive Compulsive Spartanism or Anti-hoarding, she didn't have anything in her house that could help her take care of her health — no equipment, no medicine, or internet — not that she had a cell phone or computer.

Her anti-clutter phobia included people, and she'd rejected us years ago, saying she didn't believe in family.

When her mobility decreased, she placed a series of walkers around her home and yard. If she had a vertigo spell or felt dizzy, she'd crawl — figuring she'd be closer to the ground and the damage would be less.

One night, there was a terrible storm that knocked the power out. Scared she'd fall if she went to the bathroom, she spent the whole night awake and shivering in urine-soaked sheets.

The next morning, she agreed to get part-time help.

As she was reluctant to give up any of her autonomy, my mother had her caregivers do things like keeping the wild bird and squirrel feeders well-stocked, weeding the backyard, and washing her dog — all things that weren't caregiver duties.

She was unpleasant and demanding, rolling her eyes and calling her caregivers know-nothings; not one of them lasted longer than a month.

One weekend, when no one was available to care for my mother, I volunteered myself and my partner Andy to be her substitute caregivers. We barely lasted the weekend. It wasn't her entitlement, or cleaning her after she went to the toilet or even dealing with her insistence that there would be a flood only on her street — it was the emotional and physical toll being her caregiver took on both me and Andy. She was mean, inconsiderate and seemed to make everything more difficult than it needed to be. Changing her diaper was an epic feat.

Then my mom fell twice, and it was clear to everyone, even her, that she couldn't deny it any longer: she needed full-time care.

When a friend recommended a caregiver from Fiji, my niece, Grace, immediately set up an interview.

Fane was a dream candidate — experienced with glowing references, personable, smart and easy-going. When she left, my niece Grace turned to my mother and asked her what she thought, confident that my mother was as impressed as she was.

"She's too nice," my mother said.

"Too nice? How's that a problem," Grace asked.

"She's too perfect. We need to interview more people."

But there were no more people — she'd already alienated any potential caregivers.

So, Fane was hired, and her sister Rachel came on board when Fane's back went out, which my mother felt validated her suspicions about Fane's perfection. For backup, they had their sister-in-law, Andi.

While my mother was still suspicious of Fane, she drove and could pick up groceries, do errands or take my mother into town.

Rachel didn't drive, but my mother liked her better of the two because Rachel pulled weeds, loved animals and wore cheerful colors.

The Cares (as they refer to themselves) did more than take care of my mother and her pets — they were Fijian ambassadors, teaching me the Fijian language and its culture. Still, even more than that, these loving women showed me that you don't need to be related to be family.

Instead of feeling hurt or angry, the caregivers laughed it off when my mother was cold, rude or hostile. They seemed to understand my mother put up these walls because she feared rejection and mourned her independence, so they created a safe environment for her.

"We love you," they'd tell her.

"You feel affection for me, not love," my mother would counter. "Love is an overused word."

My mother's hearing and eyesight were gone, but she'd pretend her eyesight and hearing were still viable. The caregivers indulged her by smiling and nodding as if her answer didn't match the question asked.

"What do you want for lunch?"

"It's raining outside."

They were so compassionate and patient with her. Feeding my mother a small pudding cup took an hour, especially when she tried to feed herself, missing her mouth on every try, but they never rushed her or made her feel inept.

"She is our mom and grandmother. We love her very much and are so attached to her and her animals — so we are family," they said.

During one of my frequent visits, Rachel and Fane taught me the traditional Fijian women's dance, Seasea. I felt connected to these two women as we stepped side to side, swaying our hips, clapping our hands, tapping our shoulders with our fingertips, and performing the scooping and brushing movements with our outstretched arms.

The Carers updated me daily on what my mother ate and drank, her bodily functions, and her mood. There were times when they gave me a little too much detail, but I never corrected them. They considered it part of their job to keep the family up to date on every aspect of my mother's waning life.

During any holiday, the caregivers ensured my mother had a low-key celebration. For Thanksgiving, they took the dinner I'd ordered for them and blended the turkey, potatoes, gravy and cranberry sauce together so my mother could taste the holiday without choking on it.

As her health declined, my mother slept more. At night, Rachel would say to her, "Go to sleep in peace and wake up in joy." When my mother woke up in the morning, Fane or Rachel would do their happy dance and then kiss her on the head.

In-home care, twenty-four hours a day, seven days a week, is expensive, and when we thought my mother was running out of money, we considered selling her house and moving her somewhere more affordable. However, moving a dementia patient is dangerous; the elevated levels of stress can cause a decline in their well-being.

When my niece mentioned to Fane that we might have let them go, Fane suggested that she and the other caregivers take a pay cut. I've never witnessed such a selfless act of love. In the end, we didn't have to move my mother, and she passed peacefully in her home at 98 years old — exactly as she wanted.

I'm still in contact with Fane and Rachel, and I know I can call or text them if I need to talk. Their caregiving continues in this way. They miss my mom and think of her often. They came to my mother's memorial wearing the bright colors she'd always loved.

Hiring these wonderful caregivers to take care of my mother was the best decision we could have made, and I've never regretted it. My mother was an extremely difficult patient, but that didn't affect the level of care her caregivers gave her. They found her humanity and in return, gave her and the rest of us their love.